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Spina Bifida of Western New York

Empowering Lives, Inspiring Change Together

Spina Bifida of Western New York (SBWNY) is a 501(c)3 nonprofit founded in 1973 to support individuals with Spina Bifida and their families across Western New York’s 8 counties. Our mission is to empower people affected by Spina Bifida to live full and enriched lives through community, support, and education. We envision a fully accessible and inclusive community that values people of all abilities. Led by individuals with Spina Bifida, parent volunteers and community members, we provide programs and resources to benefit families throughout Erie, Niagara, Allegany, Cattaraugus, Chautauqua, Orleans, Wyoming, and Genesee counties.

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500+ Active members
Listen to the voices of those we’ve impacted
A man and a young girl, both in wheelchairs, smile at the camera. The man wears a Spina Bifida of Western New York shirt; the girl has face paint and leg braces. People and picnic tables are visible in the background.
What You Need to Know About Spina Bifida.

Empowering Lives: Support and Resources for Spina Bifida in Western NY

A large group of people sit at tables in a community hall. One woman in the middle raises her arm enthusiastically and smiles, while others around her chat and eat. There are snacks and drinks on the tables.
Learn About Spina Bifida

Learn more about Spina Bifida.

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Two women sit at a table covered with Spina Bifida of Western New York materials at an indoor event. The table displays flyers, raffle tickets, pens, and a cup, with other attendees and tables in the background.
Types of Spina Bifida

Learn more about different types of Spina Bifida 

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Secondary Conditions Associated With Spina Bifida

Learn more about secondary conditions

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Mission & Needs

Empowering Families Affected by Spina Bifida Through Community Support and Resources

Families facing Spina Bifida often encounter overwhelming challenges. Our nonprofit is dedicated to providing essential support and resources to navigate these difficulties.
Our Mission
To empower and uplift families through education, resources, and community engagement.
Community Needs

Access to information and emotional support is crucial for affected families.

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Support

Empowering Lives with Comprehensive Solutions

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Together

Our Team

Dedicated professionals committed to our mission.
Laura Slack
  • Board Member

Laura’s favorite show is Sweet Magnolias, a series that reflects her love for heartfelt stories

Sarah Hurley
  • Board Member
Nick Heilig
President
  • Officer

Nick is a passionate disability advocate and proud leader of Spina Bifida of Western New

Kristi Leone
Vice President
  • Officer
Cynthia Carlson
Secretary
  • Officer

Cindy is the mother of an adult with Spina Bifida and a dedicated healthcare professional.

Janet Slack
Treasurer
  • Officer

Janet Slack and her husband, Dan, make their home in Niagara County and are proud

Julia Allen
  • Board Member

Julia’s favorite movie is A League of Their Own and she’ll always point out that

Rick Banner
  • Board Member

Rick’s favorite local spots in Western New York are the Grand Island Welcome Center and

Elyse Carlson
  • Board Member

People would describe Elyse as kind and determined. She enjoys reading history and non-fiction books

Laura Slack
  • Board Member

Laura’s favorite show is Sweet Magnolias, a series that reflects her love for heartfelt stories

Sarah Hurley
  • Board Member
Nick Heilig
President
  • Officer

Nick is a passionate disability advocate and proud leader of Spina Bifida of Western New

Kristi Leone
Vice President
  • Officer
Cynthia Carlson
Secretary
  • Officer

Cindy is the mother of an adult with Spina Bifida and a dedicated healthcare professional.

Janet Slack
Treasurer
  • Officer

Janet Slack and her husband, Dan, make their home in Niagara County and are proud

Julia Allen
  • Board Member

Julia’s favorite movie is A League of Their Own and she’ll always point out that

Rick Banner
  • Board Member

Rick’s favorite local spots in Western New York are the Grand Island Welcome Center and

Elyse Carlson
  • Board Member

People would describe Elyse as kind and determined. She enjoys reading history and non-fiction books

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We’re hiring!

Become part of our dedicated team today.
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We’re hiring!

Become part of our dedicated team today.
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Engage

Join Us in Supporting Spina Bifida

Your involvement can make a significant difference in the lives of those affected by Spina Bifida. Together, we can create a supportive community and provide essential resources.

How You Can Make an Impact

Follow these few simple steps to get started.

Step 1: Learn About Our Mission

Discover how we support individuals with Spina Bifida.

Step 2: Choose Your Involvement

Select how you’d like to contribute, whether through volunteering, donating, or sponsoring.
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Inspiration

Transforming Lives Through Community Support

Our nonprofit is dedicated to empowering individuals with Spina Bifida. Through shared stories and support, we create a stronger community.
Join Us
Become part of our mission to support those affected by Spina Bifida.
Real Stories

Hear how we’ve changed many lives and fostered hope in our community.

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Welcome

Supporting Every Step of Your Journey

At our nonprofit, we understand the unique challenges faced by individuals and families affected by Spina Bifida. Our mission is to provide tailored resources and support for every stage of life.
For Families
Find guidance and community support for newly diagnosed families navigating Spina Bifida.
For Caregivers
Access helpful tools and valuable resources to assist caregivers in their vital roles.
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Empower

Comprehensive Support for Spina Bifida

We provide essential programs and services tailored to individuals and families affected by Spina Bifida. Our mission is to empower and support every member of our community through education, resources, and advocacy.

Programs Carefully Designed for Every Life Stage

Our programs include educational workshops and support groups.

Resource Hub for Families and Caregivers

Access vital information and resources tailored to your needs.

Reimbursement Assistance

We help navigate insurance and reimbursement processes.
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Join Our Community Today

Stay connected with updates, resources, and stories that matter to you—join our community today.

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